Swollen Lymph Nodes Poll

[Jwarrior77]

So since getting sick over a year ago I've developed swollen Lymph nodes in my neck. Now I know this is very common in ME/CFS. However most people I encounter have painful lymph nodes that come and go. Their lymph nodes are also usually enlarged on both sides of their neck. My swollen Lymph nodes are only on the left side of my neck and are never painful. They never were in the first place. They recently increased in size and I'm not sure why. My lymphocytes on blood tests have consistently been higher than normal.

I think I briefly mentioned them to my doctor a while ago but because of so many symptoms of ME/CFS I didn't make it a big deal nor was I concerned with it really. Now it's come to my attention that mono and other viruses give you an increased chance of developing lymphoma. And usually lymphoma presents as painless swollen Lymph nodes accompanied by fatigue and weight loss - both of which ME/CFS sufferers experience. I don't know if I should pursue this with my doctors or if it's just classic ME symptoms.

Please cast a vote in the poll. Multiple selections are welcomed.

 

[Wolfcub]

I never had them with the illness whatever it was, that caused ME/CFS.
But I did get a little achiness in one lymph node which went on for a few weeks at the end of February early March this year. I'd just had a slight gum infection near one tooth so thought it was to do with that. But it lasted a couple of weeks after the infection cleared. I guess that is normal and not connected with ME/CFS (or with the coronavirus which got me about a month later??)
So I couldn't actually vote in the poll, as it was one sided and maybe connected to local infection.

 

[andyguitar]

. I don't know if I should pursue this with my doctors or if it's just classic ME symptoms.

Talk to your Doc about it.

 

[Rufous McKinney]

I am reluctant to focus attention on my lymph nodes as then the doctor thinks I should get biopsies, something I do not wish to undergo.

Some are sorer than others and they vary and they tend to all be on my right side except one area..on my left thigh.

I don't want to think about this lymphoma stuff. Put in the Don't Think About chamber and lock door.

Instead, I take chinese herbal tea for lymph cleansing which has helped, and I feel a bit less lymphy since I"m a bit more physically active than I previously was .

got 72 of PEM from massaging my legs with a vibrator last week, it felt good. Whatever we store up, when released into the system, its quite yucky.

 

[Hip]

A couple of other polls on lymph nodes in ME/CFS:

Swollen lymph nodes: Did you have these before getting ME/CFS, or did they only appear after?

Do you have tenderness at Perrin's point on your left breast (diagnostic for ME/CFS)?

 

[Seadragon]

So since getting sick over a year ago I've developed swollen Lymph nodes in my neck. Now I know this is very common in ME/CFS. However most people I encounter have painful lymph nodes that come and go. Their lymph nodes are also usually enlarged on both sides of their neck. My swollen Lymph nodes are only on the left side of my neck and are never painful. They never were in the first place. They recently increased in size and I'm not sure why. My lymphocytes on blood tests have consistently been higher than normal.

I think I briefly mentioned them to my doctor a while ago but because of so many symptoms of ME/CFS I didn't make it a big deal nor was I concerned with it really. Now it's come to my attention that mono and other viruses give you an increased chance of developing lymphoma. And usually lymphoma presents as painless swollen Lymph nodes accompanied by fatigue and weight loss - both of which ME/CFS sufferers experience. I don't know if I should pursue this with my doctors or if it's just classic ME symptoms.

Please cast a vote in the poll. Multiple selections are welcomed.

@Jwarrior77 You need to go back to your doctor and explain that the lymph nodes are painless and only on one side and that they have increased in size recently.

A good doctor should examine and palpate them and refer you for further investigations or/and blood tests to rule out other illnesses and causes.

 

[Pearshaped]

I didnt take part in the poll bec my lymph nodes were swollen and did hurt for years BEFORE I came down with ME.
(started after EBV infection when 15 yrs old)
interestingly,it is completely gone since ME started with 29yrs..

 

[Jwarrior77]

@Jwarrior77 You need to go back to your doctor and explain that the lymph nodes are painless and only on one side and that they have increased in size recently.

A good doctor should examine and palpate them and refer you for further investigations or/and blood tests to rule out other illnesses and causes.

Thanks. I'm going to follow up with my doctor about this soon. I appreciate it.

 

[Hd-x]

I also have swollen (cervical) lymph nodes,
got 2019 B-symptomatic --> nausea, vometing, rapid weight loss (14kg)
The ultrasonic showed striking morphologically lymph nodes (1 round lymph nodes + some with reduced Hilus layer, swollen up to 3.2cm)
The clinic was doing a manual bloodwork that showed a toxic granula, leucocystosis, decreased CD8 cells - but no leukemia signs so far in the blood, also no Metastasis in CT+ TRUS.
They didnt make a biopsy and at last it remained somewhat unclear, what damaged the Hilus layer,
so I still voted "swollen painless lymph nodes".

I don't want to think about this lymphoma stuff. Put in the Don't Think About chamber and lock door.
Instead, I take chinese herbal tea for lymph cleansing which has helped, and I feel a bit less lymphy since I"m a bit more physically active than I previously was .

Somewhat similar here, I also try not to think closer about lymphoma stuff - but sometimes concerns & thoughts come up.
I read last year somewhere in the web something about a rare benigne lymphoma disease that has flue (!) like symptoms and it might be interesting to rule out such lymphom diseases if having CFS.
Unfortunatly I forget the rare diseases name.
However, since I am more more physically active + better immune status, the lymph nodes were shrinking from 3.2cm down to 1.3cm.

 

[EddieB]

Has anyone had a swollen neck lymph node, with a corresponding swelling/canker sore in the mouth?
My latest adventure...

 

[morgan_25]

So since getting sick over a year ago I've developed swollen Lymph nodes in my neck. Now I know this is very common in ME/CFS. However most people I encounter have painful lymph nodes that come and go. Their lymph nodes are also usually enlarged on both sides of their neck. My swollen Lymph nodes are only on the left side of my neck and are never painful. They never were in the first place. They recently increased in size and I'm not sure why. My lymphocytes on blood tests have consistently been higher than normal.

I think I briefly mentioned them to my doctor a while ago but because of so many symptoms of ME/CFS I didn't make it a big deal nor was I concerned with it really. Now it's come to my attention that mono and other viruses give you an increased chance of developing lymphoma. And usually lymphoma presents as painless swollen Lymph nodes accompanied by fatigue and weight loss - both of which ME/CFS sufferers experience. I don't know if I should pursue this with my doctors or if it's just classic ME symptoms.

Please cast a vote in the poll. Multiple selections are welcomed.

I have always had some sensitivity with my lymph nodes after I had mono when I was 14. However, my ME/CFS came to a peak this March and since then my lymph nodes have definitely become more painful, swollen, and hard. It sometimes is bilateral, sometimes its only on one side, sometimes the sides switch. One day it will be my left side, then the next it will be my right side. I do have one lymph node though just under my jaw on my left side that is continuously larger, harder and more painful. Sometimes, particularly on my right side, my lymph nodes aren’t even swollen, but my neck is still super sore under my jaw and around where my lymph nodes are located. It always seems to vary for me though.

I am really curious to see some answers because I have been having some difficulty swallowing and the constant need to clear my throat, so lymphoma is definitely a concern for me, as it should be for most with chronic EBV.

 

[morgan_25]

Here we are again... 😊
There is something to Esophagitis EBV, but supposedly only in cases of severe illness. I’ve been scoped a couple of times, mild irritation, diagnosed as reflux. But constant mucus, difficulties swallowing and throat/chest pain makes me think there’s more to it. Do you have any symptoms of reflux?

Yes we are 😂 I have always had some acid reflux but never had these sort of issues before. It started about the same time I started having tinnitus in my ears and the facial pain etc

 

[morgan_25]

Yes, and I have been suffering with very similar symptoms for some time now, and I’m beginning to suspect the EBV is involved.

The gastrologist says I have an infection and need an ENT
The ENT says I have reflux and need a gastrologist and surgery
The gastrologist says the ENT doesn’t know what he’s talking about

It been a while, but for me, at times in the past, when cfs/fatigue symptoms subside, the reflux, throat, ear, jaw symptoms improve. And when they return, back again.

If it is Esophagitis EBV, acylovir supposedly stops it,
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2726554/

But it can’t be that simple...

Oh geeze! Sounds like a lot of ridiculous back and forth and that neither of them know what their talking about. Have you ever experienced something that feels somewhat like a cramp, but starts at the back of your head, travels down in the base of your skull then into your neck, making it feeling like your throat is about to swell shut? Also any sort of pain in throat or head when swallowing?

 

[morgan_25]

A cramp, no, I don’t think so. But throat pain swallowing, at times, definitely yes, and usually on one side. I sometimes also have chest pain with it. Also sometimes have sore tongue/ burning mouth type symptoms. I suspect to be nerve related.

I don’t know if it is a cramp, but it’s got a similar feeling, as I would think having an actual cramp in that area would be odd, and not possible in the skull area? It’s just a very constricting, tight feeling, not like burning or anything like that.

 

[morgan_25]

The pain, tightness and throat closing sensation I get sound similar.

There are a lot of sensitive nerves throughout that can be confusing. Right now I have a tiny canker sore under my tongue that feels like a golf ball.

That’s so strange. I was just wondering because I have literally never had that before and as I was laying here I just got a severe tightening pressure feeling on the back of my head that went into my throat and I felt like I couldn’t move. I sense I may be making another visit to the ER soon because of how I’ve been feeling, hopefully not though because of covid. Scary shit 😬

 

[morgan_25]

Absolutely. A few weeks ago, I had the throat pain so bad I was seriously considering going to the ER. But with the covid, it could have been hours before seen, and the risk? Thank you God I got past it. I’m going to have to get someone to prescribe some liquid lidocaine in case that happens again.

At this point, I really think it’s neurological pain. Maybe if we can somehow treat this virus like sometexan84 did we could get some relief...

Yeah I was doing some research about the esophagitis and EBV and it doesn’t seem like there is a clear link between them. What I have found is that it’s fairly rare for EBV to cause esophagitis, but then again, chronic-active EBV and EBV reactivation is suppose to be rare but look at us lol

 

[Seven7]

I didn't get LN pain until year 10 maybe? way late in the illness

 

[Rufous McKinney]

So am I it for people with a lymphoma diagnosis? It seems so.

I got recently diagnosed after a biopsy of a very "hard" thing on my parotid gland. Felt like bone. The biopsy was not that difficult to get through, but not something I want to do more of. (I could feel all the cytokines blow up, right in the middle of the procedure...and I got very squirmy as its WEIRD)

low grade B cell follicular Non Hodgkins...currently no treatment, watch and monitor as I do not have "symptoms".

However, swollen lymph nodes are proliferating in lots of new areas. Its very disconcerting and I dont' know how this is going to unfold.

 

[Judee]

However, swollen lymph nodes are proliferating in lots of new areas. Its very disconcerting and I dont' know how this is going to unfold.

Does your doctor know this is happening?

 

[Rufous McKinney]

Does your doctor know this is happening?

Yes; but I'm also needing to find a new doctor here and probably need to update my blood work.

Swelling up lymph nodes comes with the territory.